Glio wafers for glioblastoma multiforme 4

RLR

I had 6 glio wafers at the time of my surgery on1/13/09 and am doing pretty well. I also had 6 weeks of radiation and been on temodar ever since. Has anyone else had the glio wafers, and how are you doing?

Rick

Beckymarie

Brain surgery
I don't know anything about glio wafers, but was curious as to the surgery you had. Did they remove the tumor? My husband's tumor is inoperable because of the location.
Becky

RLR

Beckymarie said:

Brain surgery
I don't know anything about glio wafers, but was curious as to the surgery you had. Did they remove the tumor? My husband's tumor is inoperable because of the location.
Becky

surgery
Becky, I was diagnose with GBM4 on 12/15/08. I was told the tumor was inoperable so I went to nearby Uof Michigan (I live near Toledo Ohio) for a second opinion. They too said the tumor was inoperable. I was then sent back to Toledo where they set up radiation and chemo to start on 1/19/09. On 1/11/09 I became very ill because of tumor growth. On 12/15/08 it measured 2.5cm and on 1/11/09 it measured 7/5cm. I was taken to the hospital and through a blessing from God I meet a new surgeon (Dr. Healy)and he said I needed surgery. He said if he could get me in today he would.I had to wait from 1/11/09 to 1/13/09 for surgery. My tumor was located on the right middle part of the brain. The surgeon removed all that he could see, they called it debulking the tumor. This is when they placed the 6 chemo glio wafers.That has now been 9 months since surgery.In this 9 month period I had 6 weeks of radiation and have been on chemo/temodar ever since and was told I would be on it for about a year or so. I for the most part have done very well, meaning I can do most things I did before. The last MRI was on 9/11/09 and that is the first time they said it showed some shrinkage. About the only side affects have been fatigue and just recently dizziness. One other side affect and possibly the worst has been memory loss. I almost forgot the worst side affect from surgery was my eyesight, after surgery I had what was called 4th nerve palsey. This means my eyes no longer work together. After many months with a nero-opthalmoligist they figured I needed prisms in my glasses. About 2 months ago I had 8 pris,s put in my lens on the right eye and it has allowed me to see about as good as I did before, a few little problems but I'm not complaining. It has ben great to be able to read clearly again.

pplavenau

6 waffers
My 40 yr. old dtr. had 6 waffers implanted Aug.l9th 2009 then 30 radiation tx. and now a Temador program. She is doing very well except for needing daily naps. Her Nov.?? MRI showed no new growth. We are very pleased that she is getting state of the art treatment in Anchorage, Ak. God has given her prayer support in many states and countries. May God bless each of you.

everhopeful

RLR said:

surgery
Becky, I was diagnose with GBM4 on 12/15/08. I was told the tumor was inoperable so I went to nearby Uof Michigan (I live near Toledo Ohio) for a second opinion. They too said the tumor was inoperable. I was then sent back to Toledo where they set up radiation and chemo to start on 1/19/09. On 1/11/09 I became very ill because of tumor growth. On 12/15/08 it measured 2.5cm and on 1/11/09 it measured 7/5cm. I was taken to the hospital and through a blessing from God I meet a new surgeon (Dr. Healy)and he said I needed surgery. He said if he could get me in today he would.I had to wait from 1/11/09 to 1/13/09 for surgery. My tumor was located on the right middle part of the brain. The surgeon removed all that he could see, they called it debulking the tumor. This is when they placed the 6 chemo glio wafers.That has now been 9 months since surgery.In this 9 month period I had 6 weeks of radiation and have been on chemo/temodar ever since and was told I would be on it for about a year or so. I for the most part have done very well, meaning I can do most things I did before. The last MRI was on 9/11/09 and that is the first time they said it showed some shrinkage. About the only side affects have been fatigue and just recently dizziness. One other side affect and possibly the worst has been memory loss. I almost forgot the worst side affect from surgery was my eyesight, after surgery I had what was called 4th nerve palsey. This means my eyes no longer work together. After many months with a nero-opthalmoligist they figured I needed prisms in my glasses. About 2 months ago I had 8 pris,s put in my lens on the right eye and it has allowed me to see about as good as I did before, a few little problems but I'm not complaining. It has ben great to be able to read clearly again.

eyesight
My husband was diagnosed with GBM-4 in Oct 2008. Probably the worst thing for him has been his loss of sight on the right side. And the eyes do not seem to be working together. He was an avid reader so you know how difficult this has been for him. I am interested in the prism glasses and will check this out. Always nice to hear hopeful things. Thanks.

RLR

everhopeful said:

eyesight
My husband was diagnosed with GBM-4 in Oct 2008. Probably the worst thing for him has been his loss of sight on the right side. And the eyes do not seem to be working together. He was an avid reader so you know how difficult this has been for him. I am interested in the prism glasses and will check this out. Always nice to hear hopeful things. Thanks.

Eyesight
Hello:

The prisms have been a blessing for me. Just last week I had to go in to see my regular eye doctor again just for a exam. He figure out that I now need prisms in the top of my lens. Before I only had the 8 prisms in the lower right lens. After his exam he deterimned I need 5 more in the upper right lens. What a difference this made. I hardly noticed it but once he put the prisms on the upper I could see a huge differens right away. It took about a week for the new glasses to come in and about a day or so for me to adjust to the new prescription. I would say I am pretty close to what I was before the surgery. I just hope that you have good insureance because these new glasses cost just under $800.00 but well worth it to me.
I asked the doctor a couple of months ago when I first got the prisms if I would need these forever, at that time he said he was not sure, now he says I wll more than likely always need them. I have worn glasses for about 15 years so it's no big deal to me.
Good luck

RLR

pplavenau said:

6 waffers
My 40 yr. old dtr. had 6 waffers implanted Aug.l9th 2009 then 30 radiation tx. and now a Temador program. She is doing very well except for needing daily naps. Her Nov.?? MRI showed no new growth. We are very pleased that she is getting state of the art treatment in Anchorage, Ak. God has given her prayer support in many states and countries. May God bless each of you.

Glio wafers
As you know I had the glio wafers at the time of my surgery on 1/13/09. I too had 6 weeks of Radiation and now on Temodar. It's nearly impossible to get by without a day time nap.Good luck with her Temodar, it has not been to bad for me, I have gotten sick a few nights but that's about all. Right now I am taking temodar for 5 days then off for 3 weeks then back on for 5 days. The dr. says the MRi's are good and I am tolerating it so well I will be on this schedule until something changes.

RLR

everhopeful said:

eyesight
My husband was diagnosed with GBM-4 in Oct 2008. Probably the worst thing for him has been his loss of sight on the right side. And the eyes do not seem to be working together. He was an avid reader so you know how difficult this has been for him. I am interested in the prism glasses and will check this out. Always nice to hear hopeful things. Thanks.

eyesight
I just noticed the date of his diagnoses. My GBM grade 4 was diagnosed on 12/15/08 just a few months after his. Overall how is he doing. It sounds like we have the exact same proble with our eyes. And thank God that has just about been eliminated with the prisms.

Take care and God bless you